From the list of eating disorders, ARFID may not be one you recognize, but it can be just as dangerous as the better-known conditions.
ARFID, or Avoidant Restrictive Food Intake Disorder, is defined by the Cleveland Clinic as a condition that restricts a person’s food intake. It is recognized in the DSM-5 (the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Illnesses).
The disorder is characterized by intense fear and anxiety about food and its specific properties – such as smell, taste and texture – or the consequences of eating, such as choking.
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Extremely restricting food intake can lead to malnutrition and nutrient deficiencies, something 9-year-old Hannah from Los Angeles experienced.
Hannah and her mother, Michelle, (who chose not to reveal their last name) sat down for an interview with Fox News Digital to discuss their journey with ARFID, which included a prominent social media presence.
The duo has 1.5 million followers on Instagram. Their TikTok account (@myarfidlife) features videos of Hannah bravely trying new foods, which have reached millions of views among nearly 460,000 followers.
Long before Hannah started sharing her journey on camera, Michelle struggled with what she thought was a “picky eater.”
“I realized this was much more than just picky eating. This was clearly tormenting her.”
Michelle explained that Hannah, the youngest of three, was a “great eater” as a baby – until she was introduced to solid food.
“She would protest and spit the food out, or she would slap it out of my hand, or she would turn her head the other way,” she said — all “pretty common” behavior among children.
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But by the time Hannah turned three, Michelle said she began to refuse even the gift select foods she once ate.
“It was very frustrating for us because she was already so limited in what she wanted to eat,” she said.
Michelle, pictured here with her husband and three children, noted that Hannah’s case looked “very different” from that of her eldest son, who is autistic and had difficulty feeding as a newborn. (@myarfidlife)
Because Hannah was still growing normally, her doctors were “not too concerned” and assumed she would grow out of the picky eating.
After COVID-19 hitMichelle said Hannah’s eating took a turn for the worse and she cut out even more foods.
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“It was a big struggle to get her to eat anything at all,” she said. “She had no interest in eating at all and her growth started to slow.”
Hannah’s doctors ran tests to see if there was another health condition, such as: IBS or celiac disease. She was referred to other specialists, from endocrinologists to nutritionists.
Hannah also started seeing a nutritional therapist, which “caused a lot of stress and anxiety,” her mother noted.
Hannah, pictured with her mother Michelle, said she enjoys drawing, reading and writing, and playing with slime. (@myarfidlife)
The doctors instructed Michelle to continue offering Hannah food when she was hungry, but her daughter’s condition only worsened.
“She couldn’t handle being around food,” she said. ‘She couldn’t bear to sit at the table with us. She couldn’t stand the smell when I was cooking something in the kitchen.”
As Hannah grew older, she did not outgrow the condition, but was able to put her internal struggles into words.
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“We were in a drive-thru and I asked (Hannah), ‘What do you want me to order?’ And that’s when she broke down and asked me, ‘Why do I get so worried every time you talk about food?'” Michelle recalls.
“When I heard those words… I realized this was much more than just picky eating. This was clearly tormenting her.”
Seeking help and ‘validation’
Michelle decided to seek help from one mental health care professional and found a therapist who specialized in ARFID. She said their first conversation was “so affirming.”
“I remember saying to her, ‘She has very few foods she wants to eat. And one of the foods is sour cream and Pringles onion, but they have to come in special packaging. She refuses to eat the Pringles that come in.” the large container. They have to go into the individual small containers.'”
“And hearing her words – ‘This is so classic ARFID’ – was so affirming.”
According to an eating disorder expert, the “psychosocial interference” of ARFID can be difficult in social settings, such as school and parties. Hannah, pictured with her brothers, lives with the condition. (@myarfidlife)
The therapist first advised nutrition protein shakeswhich were difficult for Hannah to digest.
But Hannah, who was dangerously underweight, told her mother: “I don’t want to live like this anymore.”
“She was at risk of needing a feeding tube,” Michelle told Fox News Digital. “She was off the growth chart and not gaining weight. She didn’t grow in height.”
“I don’t want to live like this anymore.”
“She just wasn’t getting the nutrition she needed. She was very weak, lethargic and slept a lot.”
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Michelle tried fun ways to get Hannah to drink the shakes, timing her and seeing if she could beat her previous record.
Then Michelle suggested making a video of Hannah drinking her shake, to send to her new therapist.
Hannah was immediately interested in how her therapist would respond.
Hannah says her famous catchphrase, “Here I go,” before taking a bite in her videos. (TikTok/@myarfidlife)
Michelle then decided to share the video online to help friends and family understand what Hannah was dealing with, and to explain why she couldn’t go to holidays or birthday parties due to the presence of food.
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Since that first post, Hannah and Michelle’s social media following has skyrocketed, with thousands of strangers cheering and motivating Hannah.
“Hannah has grown so much physically and emotionally. Her confidence has increased tremendously,” Michelle said. “She’s a completely different child.”
“There’s curiosity, motivation and excitement – definitely still a lot of fear, but she’s working through it.”
Hannah and Michelle are pictured wearing ‘Here I Go’ T-shirts, which are on sale to raise ARFID awareness. (@myarfidlife)
Now 9, Hannah uses her platform to spread ARFID awareness and share tips she learns through therapy.
“Many people since we started our page have discovered that they have been dealing with this their entire lives,” Michelle said.
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“It’s just really nice to meet other people who can understand each other and share stories.”
Hannah added that the encouragement she receives online motivates her to do so try new foods.
“It makes me really happy because I know I’m helping other people,” she told Fox News Digital. “And I help myself too.”
Hannah said she is proud of her continued courage.
“I feel good,” she said. “I’m very energetic today.”
Tips to Overcome ARFID
During her sessions, Hannah undergoes both exposure and talk therapy.
“We do breathing exercises and coping skills,” she said. “We also try different foods.”
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Taylor Rae Homesley, executive director of the Atlanta-based Eating Disorder Treatment Center of the Emily Program, works with ARFID patients.
She shared more details about the condition in an interview with Fox News Digital.
Although symptoms can vary, restricted food intake based on texture or food group is a noticeable sign, according to an expert. (iStock)
Since ARFID was coined as a “new term to describe something that has been around for a long time,” Homesley said it has brought more awareness to the condition and how best to treat it.
There are three types of ARFID symptoms parents have to search with their children, according to Homesley.
1. Fear of consequences
“I’m afraid I’m going to vomit, I’m afraid I’m going to get a stomach ache, I’m afraid I’m going to suffocate,” the expert mentioned as examples.
2. Lack of interest in eating or food
“These are children and adults who are just not motivated by food,” she said.
“They’re the ones who can play outside for hours and not think, ‘Now it’s time to eat.'”
3. Avoidance of foods based on sensory characteristics
“These are the kids and adults who are super limited in what they eat because of those sensory things,” Homesley said.
“They may have an aversion to the taste, texture, smell or temperature of food.”
“(ARFID) should be treated differently and recognized as another eating disorder,” said one specialist. (iStock)
“Many of our patients with ARFID are what we consider supertasters,” the therapist added. “They taste bitter flavors at a higher intensity than the rest of us.”
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Treatment for ARFID is still being developed, but methods such as cognitive behavioral therapy have proven useful, according to Homesley.
Michelle noted that ARFID needs “a lot more awareness” and community building, which led her to create the nonprofit ARFID Awareness.
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“Help is not readily available, and it is very unfortunate because ARFID is lifelong and it is something that requires treatment,” she said.
“I feel like bringing the community together and using our voices (is important) so people see there is a need.”
